By Kevin Longino, CEO of National Kidney Foundation and kidney transplant patient
Always ready to take action no matter what, when or where, this week 150 kidney patient advocates from around the country will be Zooming with Members of Congress and their staffs to plea for action on kidney disease. As COVID-19 continues to create more kidney patients, their voices are needed now more than ever before. Read on to learn more.
Kidney Patient Summit
Today, advocates from kidney organizations representing nearly all 50 states will converge virtually for meetings with their Congressional delegations to inspire action for kidney disease at the 7th Annual Kidney Patient Summit.
This year, advocating for kidney disease has taken on new meaning. As we continue to see the devastating effects of COVID-19 on the kidney community, especially our dialysis and transplant patients, the pandemic is also creating new kidney patients at an alarming rate.
Advocates will ask their Congressional delegations to support public policy priorities that advance kidney disease prevention, early detection, treatment, research and access to transplants, including living organ donation. And we’ll be joined by actor, activist, and entrepreneur Wilmer Valderrama who will lead a virtual briefing for Congressional staff on the impact of kidney disease to Hispanic communities. Wilmer is serving as NKF’s national spokesperson for the “Are You the 33%?” campaign, which focuses on the 33 percent of adults in the U.S. at risk for developing kidney disease.
What do we want?
Well, in a nutshell, to make kidney health the national priority it deserves to be. We’ll be asking policymakers for three things. The first is to pass the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act which extends Medicare coverage of immunosuppressive drugs for kidney transplant patients beyond the 36-month cut-off currently in place to cover medications for the life of the transplant. This is bi-partisan legislation; not a political football. Not only will it save lives; it will save taxpayer money. According to a preliminary report from the Congressional Budget office, this legislation will save approximately $70 million over ten years.
If you want to really understand a patient’s perspective on how a lack of Medicare coverage for immunosuppressive drugs affects a family, take a moment to see Bobbie’s story. Real families need real help now. We urge the Senate to pass the legislation this year, patients’ lives are truly hanging in the balance.
We’re also asking Congress to increase funding for kidney disease research and programs including a nationwide Kidney Risk Campaign to reach the undiagnosed. Why? An estimated 37 million adults in the U.S. are affected by kidney disease but 90% are unaware they even have it. Many patients don’t learn they have kidney disease until their kidneys have already failed. And kidney disease patients are at an increased risk of severe consequences from COVID-19; so people really need to know if they have kidney disease to better protect themselves.
And finally, to pass the Living Donor Protection Act which prohibits insurance companies from denying or limiting life, disability and long-term care insurance to living donors and from charging higher premiums. It also ensures job protections for organ donors who need to take medical leave for organ donation and recovery after surgery. Nearly 100,000 people are waiting on a kidney transplant right now but there aren’t enough kidneys to go around. We have to remove the barriers to living organ donation so that more people will consider donating a kidney to a loved one, friend, co-worker or even to someone they’ve never even met.
If you’re willing to join us to help make kidney disease the national priority it deserves to be, become an advocate, we need you! And if you want to join the social conversation and share your kidney story use the hashtag #MyKidneysMyLife.
Be well and stay safe.